Anyone with leiymosarcoma?

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wing and a prayer
wing and a prayer Member Posts: 1
edited March 2014 in Uterine/Endometrial Cancer #1
Hi there,
In April of 2009 I was diagnosed with high grade uterine leiymosarcoma. Anyone out there with a similar diagnosis?

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  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • daisy366
    daisy366 CSN Member Posts: 1,458 Member
    #3
    unknown said:

    This comment has been removed by the Moderator

    Wing and a prayer
    My maternal first cousin who lives in Germany has what you have. I have UPSC - papillary serous endometrial. I wonder if there is any genetic connection to these rare cancers. She was raised in Germany, me in the US. She has been battling this for a couple of years.

    I wish you well. Blessings, Mary Ann
  • Mana
    Mana Member Posts: 3
    #4
    I have leiomyosarcoma too
    Hi wing,

    I was just diagnosed with leiomyosarcoma too. I think that there are others on the board, although the spelling is so hard that searches sometimes come up empty.

    I found references that other members with leiomyosarcoma are RuthRose,Gma,selena, Reneekarin1969, and more, although some are really old.
  • catbird
    catbird Member Posts: 33
    #5
    Mana said:

    I have leiomyosarcoma too
    Hi wing,

    I was just diagnosed with leiomyosarcoma too. I think that there are others on the board, although the spelling is so hard that searches sometimes come up empty.

    I found references that other members with leiomyosarcoma are RuthRose,Gma,selena, Reneekarin1969, and more, although some are really old.

    wing - i have it too
    i was dig w/lms 8/2009. just finished chemo. below is a web site for people with lms only. Also, look under sarcoma in the "discussion boards" - there's 2 for lms


    http://listserv.acor.org/archives/l-m-sarcoma.html
  • jnlim
    jnlim Member Posts: 4
    #6
    Anyone with Leiomyosarcoma
    Are u on chemo now? I was diagnosed in Nov 08. LMS Stage 4b. Went thru 6 rounds of chemo ( doxorubicin and infosamide). had A radio frequency ablation done to burn off the resistant tumour in my liver in March last year. Was put on mecgace for 8 months an put on a lot of weight. About 1 kilo a month. Oncologist had change it to femara. Lost weight but other side effects. Stiff joints and very painful hand arthritis!!!
  • BITMOYD
    BITMOYD Member Posts: 2
    #7
    I was just diagnosed
    I just found out three days ago that I have leiomyosarcoma in my uterus. I am still trying to deal with all of the unknowns. I have a 7yr old son and I have no idea what to tell him at this point since my OB isn't able to tell me anything about the cancer. I have two oncologists lined up, appts have been made, now I am just waiting for next week to get here so I can get more info.
  • jjmb126
    jjmb126 Member Posts: 14 Member
    #8
    BITMOYD said:

    I was just diagnosed
    I just found out three days ago that I have leiomyosarcoma in my uterus. I am still trying to deal with all of the unknowns. I have a 7yr old son and I have no idea what to tell him at this point since my OB isn't able to tell me anything about the cancer. I have two oncologists lined up, appts have been made, now I am just waiting for next week to get here so I can get more info.

    hystersisters
    No disrespect to this board but you might find more immediate information on Hystersisters -

    http://www.hystersisters.com/vb2/forumdisplay.php?f=6

    as this board is very difficult to navigate. Having said that, if you know what to look for, its an invaluable resource. There other links out there -

    http://www.mskcc.org/mskcc/html/13242.cfm which is the link to Sloan Kettering

    and http://www.leiomyosarcoma.info/steptwo.htm, this one deals in with all leimyosarcoma and has a page devoted to Uterine Leiomyosarcoma.

    Whatever you read, remember every case is unique and your doctors will be the best resource.
  • tracyrenaewilson
    tracyrenaewilson Member Posts: 5
    #9
    BITMOYD said:

    I was just diagnosed
    I just found out three days ago that I have leiomyosarcoma in my uterus. I am still trying to deal with all of the unknowns. I have a 7yr old son and I have no idea what to tell him at this point since my OB isn't able to tell me anything about the cancer. I have two oncologists lined up, appts have been made, now I am just waiting for next week to get here so I can get more info.

    I have a 7 yr old and I too had Leiomyosarcoma
    Hello my name is Tracy Wilson. I am here if you need any questions answered or any ideas??? I was diagnosed almost 2 years ago and I have been cancer free since. Please let me know how things are going! I can help you through this!
  • bea-mil
    bea-mil CSN Member Posts: 108
    #10
    tracyrenaewilson said:

    I have a 7 yr old and I too had Leiomyosarcoma
    Hello my name is Tracy Wilson. I am here if you need any questions answered or any ideas??? I was diagnosed almost 2 years ago and I have been cancer free since. Please let me know how things are going! I can help you through this!

    Hi Tracy
    Can you please tell what kind of treatments you had?
  • tracyrenaewilson
    tracyrenaewilson Member Posts: 5
    #11
    bea-mil said:

    Hi Tracy
    Can you please tell what kind of treatments you had?

    I had pelvic radiation and
    I had pelvic radiation and internal vaginal radiation. It took and still is taking a while to get over! All is good mostly! I go to my 3 month on Friday to see how things are going!

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